Essential Sites

Caregiving as a Moral Experience

My own experience of being the primary caregiver for my wife, on account of her neurodegenerative disorder, convinces me yet further that caregiving has much less to do with doctoring than the general public realizes or than medical educators are willing to acknowledge. Caregiving is about skilled nursing, competent social work, rehabilitation efforts of physical and occupational therapists, and the hard physical work of home healthcare aides. Yet, for all the efforts of the helping professions, caregiving is for the most part the preserve of families and intimate friends, and of the afflicted person herself or himself. We struggle with family and close friends to undertake the material acts that sustain us, find practical assistance with the activities of daily living, financial aid, legal and religious advice, emotional support, meaning-making and remaking, and moral solidarity. About these caregiving activities, we know surprisingly little, other than that they come to define the quality of living for millions of sufferers….

Economist configure caregiving as “burden.” Psychologists talk about “coping,” health-services researchers describe social resources and healthcare costs, and physicians conceive it as a clinical skill. Each of these perspectives represents part of the picture. For the medical humanities and interpretive social sciences, caregiving is a foundational component of moral experience. By this I mean that we envision caregiving as an existential quality of what it is to be a human being. We give care as part of the flow of everyday lived values and emotions that make up moral experience. Here collective values and social emotions are as influential as individual ones. Within these local moral worlds—family, network, institution, community—caregiving is one of those things that really matters, but usually not the only thing.

Arthur Kleinman is Rabb professor of anthropology in the Faculty of Arts and Sciences, professor of medical anthropology and professor of psychiatry at Harvard Medical School, and Fung director of the Harvard University Asia Center.